Rachel Cohen-Rottenberg is a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She publishes the blog Journeys with Autism at www.journeyswithautism.com. Her memoir, The Uncharted Path: My Journey with Late-Diagnosed Autism, was released in July and is available on Amazon.com.
In November of 2008, at the age of 50, I was diagnosed with a form of autism called Asperger’s Syndrome. Far from being a tragedy, discovering that I am autistic has been one of the most healing, liberating, and empowering experiences of my life.
Like many autistics of my generation, I had wandered in the wilderness for decades, feeling bewildered and broken, unable to make sense of my life. Try as I might, I’d never known how to navigate the social world. Staying in sync with the rhythm of a conversation, even in a small social gathering, had always been difficult. Worse still, I’d always felt frightened, overwhelmed, and disoriented in large crowds. At every noisy social event, I’d end up in the same place: leaning against a wall and looking for someone else who seemed equally dazed. I could barely hear myself think. If there were a library in the building, all the better. I’d go there and hide.
When I didn’t know that I was autistic, I didn’t take care of myself properly. I never rested. I never gave myself a break. I never took care of my sensory needs. I never said “I can’t” when I couldn’t do something. I just drove myself mercilessly, thinking that with just a little more effort, I would magically become like everyone else. Needless to say, it never happened, and I now wonder why I ever had that aim in the first place. Nearly two years since my diagnosis, I’m thriving and finding my place in the world. Taking care of myself has become a reflex. Taking breaks has become integrated into the fabric of my life. Making my needs clear has become a necessity. Being open about the adaptations I need to make has become a source of pride. And acknowledging what I can and cannot do has become an enormous relief.
Of course, being autistic isn’t just about difficulty. It’s also about finding one’s gifts. In becoming conscious of my intense visual acuity, I have discovered my talent as a photographer and visual artist. In understanding that I am keenly sensitive to the needs and feelings of other people, I have developed the ability to exercise good judgment about the kinds of situations in which I put my highly empathic system to work. In finding that I see the words that people speak constantly spelled out across my mental screen, I’ve discovered how I managed to teach myself to read at the age of three, and why I’ve always been a writer. And in wrestling with an honesty and a directness that can make me vulnerable, I’ve found that they also make me a trustworthy and supportive friend.
Rachel,
Like you, I was diagnosed as on the autism spectrum later in life (my 40′s). So much of what you shared I can relate to personally. Especially about not taking care of myself before I knew I was on the spectrum. Most of my life I pushed myself hard & oftentimes to the breaking point to get things “just right.”
I’m no longer as hard on myself (most of the time) and I have learned to not be discouraged with my challenges, but rather positive about my gifts. Everyone has their unique talents, and I have taught myself to slow down and fine tune my natural ability to focus in order to make the most out of whatever I am currently engaged in doing.
Thank you for sharing your story with all of us Rachel! And thank you for supporting the AWN in the Pepsi Refresh Contest.
I totally relate to your story, as well, also discovering I had Asperger’s in my 40′s, as well as SPD (Sensory Processing Disorder). In so many respects you are telling exactly my story; how I felt, my struggles, how I pushed socially myself constantly not realising that was the antithesis of what I needed and that I could have benefitted greatly from having structured time outs. I naturally worked “away from people” activities into social situations without realising why, although, they weren’t enough of a break ever.
You don’t mention any difficulty with jealousy, bullying, or social interactions in general, which I find particularly interesting, since it is such a huge part of Aspie life.
I DO spend more time taking care of myself and have a clearer understanding of what is going on with me now. That has, indeed, reduced my stress level on a daily basis. But I haven’t exactly had the experience of it being “one of the most healing, liberating, and empowering experiences of my life” in any way. I think that I did as well as I did under the assumption that I had the power to make things different with myself but that I had not yet achieved my goal. Now that I know that this is the way that it is, I feel robbed of my personal power and I feel imprisoned and defeated. And there is virtually no Aspie behavioral help out there for adult women.
I already had a career path that suited my abilities well. Unfortunately, part of it means dealing with people in long concentrated amounts of stressful time in order to get the job done. It is also rife with jealousy (which I don’t experience and didn’t recognise in others at all for most of my life) and bullying (where I am completely unarmed). I haven’t been able to become success doing something that had I been NT, I would have been. And now, it’s clear that without a powerful advocate, I will not be a success or be able to support myself.
I am happy that you have found it to be freeing and that it has improved your life so much. It is always heartening to hear that diagnosis turns someones’ life around for the better. I am curious to know about the social scene for you past and present and how that may, or may not, have changed.
I should note that there is a LOT more to our writers’ stories than they could fit here. If you go to Rachel’s blog you may find more of what you were looking for!
Sorry about the errors above. The text is small in the comment typing box. I saw no ability to preview and I see no way to edit the post to correct them.
Cheers
Hi Grayson,
Just to clarify, yes, absolutely, I have dealt with bullying and other people’s jealousy throughout my life, and it has been a very painful thing and a source of tremendous grief. When I say that my diagnosis was healing, liberating, and empowering, I don’t mean that my life became smooth sailing, by any means, after the diagnosis. I mean that it gave me a clear mirror that helped me get to a place of self respect about who I am that does not include thinking that I am broken or impaired or disordered. I’m just differently wired, and perfectly fine as I am, just like everyone else. That kind of deep self-acceptance had always eluded me before. The level of self-respect I’ve developed gives me the ability to care for myself and advocate for myself in ways that had formerly seemed impossible.
I feel like this is much too brief an answer for the questions you ask, so as Sandy suggests, please come over to my blog. Hopefully, you can take something from it that will help you on your path. I agree with everyone else who has said that most of the support services out there are for children and parents, and that there are very few for adult autistics, particularly those of us who flew under the radar for most of our lives. I share my story on my blog in the hope that it will be a source of support and empowerment for other adults.
Blessings,
Rachel
I was 57 when i was dxed. I love it. It is liberating
I no longer have to expect me to deal with sensory assaults which means so many of the things i used to expect from myself
One example: If you are talking to me in a noisy place ( unlikely since u are also dxed ) i can say that i don’t understand you because its noisy and my disability makes hearing you hard. It’s no longer about me not caring or trying hard enough. I have always known i care and try hard and yet people kept telling me that it was not enough. Now it can be enough. I am so much more in charge of the level of stimulation The external environment does matter now. I can be human now in my expectations. I do have meltdowns but they can be learning rather than confusion for the most part. I can ask (and sometimes insist) for help when going into a difficult situation. I used to feel borderline suicidal when dealing with government bodies . I still have to deal with them but its not alone and scared. I am still scared but it’s not overwhelming.
I wish i knew this earlier. I can only look forward to an impoverished old age but I don’t have to do it totally alone and helpless. My diagnosis gives me this much. I may be able to fashion some sort of life in the years i have left. We will see.
“To thine own self be true.” (William Shakespeare) #smilesandhugs
Dear Grayson,
I think there is help in the sense of helping each other. I am fortunate to know that exchanging ideas with like minded people is one of th best things in life. So i come here and to GRASP-Global and other places to share ideas It allows me a better view into my behavior by looking at others like me. A cat raised by dogs has a lot of instincts that she doesn’t know how to meld into dog society. If i put that cat into a society of cats she will still have some problems but her instincts may serve her well. So i need to be around others of my kind to learn what I need to do to succeed at being me. We all want to be ourselves.
BTW I do wish i could correct errors. I make so many and i can correct them elsewhere but not here.
Like the others, Sandy’s life experience prior to her dx is mine also. I was 56 when I was dx’d a second time, independently from the first dx and I began to take the dx seriously. It has been very difficult for me to accept that I have lived my entire life unaware and un-dx’d. It has taken about a year for me to come around and accept the dx and to begin to modify my activities to accommodate this “gift”. The dx has been liberating for me in the sense that I can now understand why I responded as I did to so many of my life’s situations. I have always intuited that something was “wrong” , very wrong about me. Not knowing exactly what was “wrong” caused me tremendous anxiety. So the dx has been uplifting and has provided a bit of a “roadmap” to help me plan. I clearly have much more to learn; I am unfamiliar with the “jealousy” component mentioned above. But I have come to view this dx as a gift. I need to learn how to harness it better and apply it to useful purposes. I just wish I had known of it before a shattered career, two failed marriages and alienated family and friends. I find myself living isolated and completely, totally alone in a sea of people and unable to support myself.
Cecil,
I hope you’ll come over to my blog and look around. A lot of folks in mid-life post there, and it may help to ease your sense of isolation to hear what others have to say. Our stories may differ in certain details, but the issues we face are often very similar.
Blessings,
Rachel
I found your story very interesting, as I could relate to it so much. I am not diagnosed but feel sure that I have mild Asperger’s Syndrome. All my life I have been “different”, “strange” and very uncomfortable in social situations. I have made a few friends but they are few and far between. Mostly I feel like I am observing everyone else live their lives without being able to join in. This has caused me much anguish and depression as I could never work out what it actually was that made me so unlikable and odd. When my youngest son was diagnosed with Asperger’s Syndrome 2 years ago it was like a revelation. At last I knew what was “wrong” with me.
The most interesting thing in your article, for me, was when you talked about being highly sensitive to other people’s needs and feelings. A few people I have mentioned my self diagnosis to, including health professionals, have pooh-poohed it as I am intensely (almost painfully) empathetic. They claim that all people with AS are oblivious to other’s feelings. I would be interested to hear your views on that.
Cheers
Cherie